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Tag Archives: disabled

The terms we use

13 Nov

I read a post by a disability blogger I follow, about the use of infantilizing words and phrases we use in lieu of “disabled” – like “Differently Abled” and it’s shorter term “Diffabled”.

I’ve always hated differently abled. Diffabled just is ridiculous.

I got what this blogger was saying, because I’ve seen grown adults do gymnastics to avoid the word “disabled”. Like the one I heard, where the person used the term “special abilities” – I interrupted slightly and pointed out that the phrase they used made them sound more like Superman. My daughter isn’t a member of the X-Men, she is disabled.

The part of the post written by the disability advocate that made me pause was that they considered “special needs” basically as bad as “differently abled”.

There is a part of me that gets it. It is a bit cotton candy of a descriptor, and it’s something that people usurp unnecessarily. “We ALL have Special Needs.” they’ll quip in a show of false solidarity. No Gladys, your preference to mayo over mustard on your sandwich is not the same as my daughter’s apraxia. Thanks for playing.

But there’s a part of me who has had the experience where we’ve had to use it to describe our daughter, and would still use it even though I kind of knew better. 

Why?

Well, part of it is because of society. When you think of the word “disabled” or conjure up a picture of a disabled person, what picture pops up in your mind’s eye? I bet there’s a wheelchair involved, or a person with Down’s Syndrome. Those are the disabilities we’ve come to know as society.

If I walked out of the disabled toilet with my disabled daughter in tow, we will sometimes get a stink eye from those waiting. Because my daughter doesn’t look disabled, therefore, we have no right to use it. Even though she IS disabled.

Society reminds me that my daughter doesn’t fit the visual of “disabled”. 

Add to that, the fact that my daughter doesn’t have a diagnosis. We can’t say “She has autism.” or “She has Fragile X Syndrome.” So we have no label that society can embrace warmly and say “Oh, I’ve heard of that because some celebrity’s kid has that.”

Frankly, we weren’t even allowed to use “disabled” with her for the longest time, partially because we didn’t have that qualifying diagnosis that made her legitimately disabled in society’s eyes. Oh sure, the girl wore ankle braces and was in OT/PT/ST and had a laundry list of issues – but the school kept checking off the box of “developmentally delayed” until it was ridiculous. As the special education director didn’t like spending SpEd money on SpEd students, I’m pretty sure ticking off the “delayed” box meant that they could spend less on her.

But even before that, I had people tell me that I was overblowing Maura’s issues. That she’d be fine. That it wasn’t like she had a real disability like other kids they knew. Doctors at first said she’d probably outgrow her delays. They were, after all, just delays. They weren’t real disabilities. If they were, surely she would be worse off, have a label, have a diagnosis.

You can see how we hesitated to use the term “disabled” with our daughter. Not because we saw it as a dirty word – but because in many ways, we weren’t allowed to use it. 

It wasn’t until we moved to Ireland that we started feeling like it was okay to use the phrase “disabled” with Maura. Mainly because in Ireland, they looked at her and said “Yep, she’s disabled, here’s a school for disabled kids, here’s some disability benefits, what do you mean people in the States didn’t think she was disabled? And what’s wrong with being disabled anyway? Nothing. Nothing’s wrong with that.”

Just like that, we were legit – though I still got a bit of a stink eye coming out of the disabled toilet with her at the shopping centre at Christmastime with the long lines. I swear, we weren’t cheating! She is disabled!

Because at the end of the day, Maura still doesn’t look disabled. We still don’t have a diagnosis. All we have is “intellectual disability”, which is a mouthful and honestly, I don’t think really describes her well. It’s too generic, and doesn’t take into account her savvy ways and cleverness.

Just today though, I came across a blog written by a mom of a child with physical disabilities. And the tag line for it stated how she was writing for disability and special needs awareness. I wondered – if they’re both supposed to be the same, why the “and”? They aren’t two different things.

And just like that, I understood better the disability advocate’s point of view. That by using “special needs”, we’re downplaying actual disabilities. 

Something I should know already because it happened to us.

Or maybe, because it happened to us, I was too close to things, and needed that fresh perspective.

I’ve been working to phase out my use of “special needs” – but I need society to catch up with me, to follow my lead.

So please – I’m asking you – call my daughter disabled. Consider her disabled. Her disabilities are legitimate. Her disability is real even if it doesn’t have a name, or if we don’t know the cause of it. In a way, we’ve worked really hard to earn that label of disabled. It isn’t an insult…unless you think being disabled is a sad burden of a life. Then you need to rethink a lot of things, because my daughter’s life is a fabulous one.

IMG_3039

Maura – 2011 – Killiney Beach, Ireland [image description: little brown haired girl in a light pink top and darker pink skirt, wading slightly into the Irish Sea, hands up in surprise as a wave hits her ankles]

 

 

 

 

 

 

 

 

 

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Disabled, #saytheword, and special needs

18 Feb

A friend sent me a message today – “Have you seen this? What are your thoughts?” with an accompanying link to a blog post entitled “”#saytheword, not “special needs.

As I refer to Maura as having some special needs, my curiosity was peaked.

Please note – the author of the blog post asked me to remove her words, and I’m respecting her request – to summarize, the blog writer talked about how when people say “special needs”, it gives the idea that those with disabilities are asking for more than their share when they ask for accommodations, support, etc, so they can have as equal of an experience or access as a non-disabled person. She also writes how the phrase “special needs” goes against the social model of disability. As in, a deaf person is not disabled because they can’t hear, but because the world was set up for hearing people who have made things inaccessible for non-hearing people.

 

Hmm. Well, I’ll admit, I’ve never looked at it that way. I just found it a really easy way to quickly convey Maura’s differences in a way that the common people could grasp.

Again, original blog post words were removed, and I am summarizing – Apparently, some people find the word “disabled” stigmatizing. Not using the word makes that worse. The word disabled isn’t a dirty slur word, stop treating it as such. 

I have to admit again, I didn’t realize using the word “disabled” was seen as a bad thing. I also refer to Maura as “cognitively disabled” or “cognitively impaired”. It’s really her only real label. It’s on all her special ed paperwork and helped us get her qualified as “disabled” in the eyes of the state (not that we get any benefits, just that recognition, but that’s another blog post for another day.)

So now, there’s a call out to stop using the phrase special needs. We’re to proudly say Disabled.

And maybe I haven’t had enough coffee, or have watched too much “Scooby Doo”…but part of me is a bit…huh?

First, yes, language matters. I will totally go to bat on that one. However, if someone asks me if my child has special needs, I’m not going to lambaste them for improper language. I’ll say “Sure, she has cognitive impairments and low muscle tone and apraxia and how long do you have because I have this great soapbox I can climb up on while boring you with the details of what all makes my daughter different. You’ll love my impassioned speeches on health insurance and special education! Wait! Come back!”

Or, you know, I just say “Yep.” and then move on. Because usually, they don’t want to know everything, and if they do, they will ask more questions, and I will answer more questions. Or we go forth and talk about something else. Because life doesn’t really quite revolve around my daughter’s disabilities. It also revolves around the Xbox and how much food is left in the fridge.

Maybe it’s because I don’t feel shame in the word “disabled”. I feel like I spent years trying to get people to admit that yes, my daughter has legitimate disabilities and because of those, special educational needs. I worked hard to get everyone on the same page. Honestly, looking back, I can’t believe I had to fight for it. If anyone yells at us for using the disabled toilet, I will pronounce that my daughter is, in fact, disabled, and we have legit reasons for using it. That hasn’t happened yet though, because if anyone gives me a look, they get a wicked side eye from me. I only have so much time in my day.

All that said, I still refer to Maura as having “some special needs”.

Why?

Well, I don’t know…I just have. We’ve never had a handy label, and she’s physically able. People are quick to get our situation when I say she has special needs. There’s a lot going on in my life, and I can only explain Maura’s differences so many times before I go the quick and easy route. Otherwise, my coffee would get cold, or I’ll miss dinner.

And because I’m so busy doing other things, and because we’re also in a little bubble of our own in the world of the undiagnosed, I never knew this was a problem. Or the word “disabled” needed to be taken back.

The one thing I do know is, if we get caught up in reclaiming words and using the right wording at all times, we may actually put off those who otherwise are trying to learn and understand. If you show genuine interest in my daughter and her disabilities, and are actively trying to learn more about them – or just decide that she’s awesome and nothing else matters – I’m not going to jump down your throat if you don’t use the right terminology. Hell, people have flat out asked me “So what IS wrong with her?”, people who became great friends, and who always included Maura in things.

See, we all say really dumb things sometimes. No one says the right thing always. You can be the most PC person and still be a jerk towards my kid. Or, you can be a good person who doesn’t know that there’s a war over words going on, you just want to know more because you’re a decent person.

So yeah, that’s my non-answer to this newest thing to cross my path. Will I change? Probably not. Is that awful of me? I’m sure I’ll be judged by some for it. Do I have time for that? No. I’m too busy with other things in my life, like finding ways to meet my daughter’s exceptional, unusual, singular, uncommon, unique, special needs. And buying more food for the house full of ravenous, famished, carnivorous teens. And meeting my own, mundane, run of the mill, ordinary needs.

 

 

Steve Harvey and Texas are making me mad this morning

27 Mar

First, I spotted this, via Autism with a Side of Fries – to summarize, this mom heard comedian Steve Harvey on his morning show, making fun of special needs people –

 

And this was her response to him –

 

 

Her reaction?  Her trying to stay calm then building up to angry tears and frustration?  Exactly the emotions that played out with me.  Because Maura?  Maura could be that 32 yr old in church, playing with dolls, wearing bobby socks, and making weird noises.  She WAS that child last Sunday.  My daughter is a beautiful child of God and the last place she should feel unwanted at is in church – and the Pope would back me up on that, thank you very much.

And that mom has it right – why is it still okay to make fun of these people?  These people who can’t defend themselves?  Why?  You didn’t need to go there Steve.  You didn’t.  Shame on you.

“This is our lives!” the mom says.  And I get her.  Oh, I get her so much.  I want to just give her a big hug, because I know.  I know what she’s feeling.  We love our children so much.  We love them so much because we know that their paths are so very hard, that they will be shunned simply for being disabled, for being different.  And yet, we’d prefer the quiet shunning versus them being ridiculed publically.  It is a hard life that we somehow find the joy in.  We accept our children for the beautiful souls that they are.  They don’t deserve to be ridiculed.

The above was brought to me as I was still reeling over another story I read out of Harris County, Texas, about a special needs student who was assaulted by his paraprofessional – the person who is supposed to be keeping him safe.  And yet, because there was no “injury”, there will be no charges against this grown woman who put her hands on a child.  She is on video, choking this boy, but because she didn’t actually physically injure him, there is nothing to charge her with.

But there was injury.  Injury to the child, who has had trust broken.  Injury to the parents, who sent their child off to school, told to trust the school, only to have their child abused and not told about it for days.  The greater special needs community has been injured, because this is one of our biggest fears.  No, there might not have been physical injury, but there was harm done. We’re told to trust schools, to send our children off, all will be well – and yet, these stories constantly pop up and remind us that the world is an even scarier place if you are disabled.  The para-pro may have lost her job, but the family in this case lost something much more precious than a job.

This is our life.  The life we choose to celebrate and live with as much joy as possible.  A life where I revel in every one of my daughter’s hard-earned achievements while knowing that she’s fodder for comedians who don’t think, and that her chances of being abused are astronomically higher than the rest of society. And I will continue to be her voice, to speak out against these things, because she is totally worth it.  Because Maura deserves better.  We can do better people.  We can do better.

The bigger Olaf came via the kindness of a stranger, that my husband met on a plane.  This stranger heard Maura loved "Frozen" and gave the big Olaf to Josh to give to her. Because most of the time, people are good.

The bigger Olaf came via the kindness of a stranger, that my husband met on a plane. This stranger heard Maura loved “Frozen” and gave the big Olaf to Josh to give to her.
Because most of the time, people are good.

 

Okay, it’s been a couple days, but I had to add on to this post –

One of my readers sent me the link to what was actually said – and I quote – “…half-wit ass niece…” you can hear the woman trying to change the subject but not very well because he kept going on.

He did apologize later that day with this –

To everyone, please accept my sincerest apologies. It was not my intent to hurt any one. Sister Odell is a made up character, she’s not real and my intent was not directed at any other real person. And most certainly was not directed at any one you know. Again my apologies. The problem with comedy is ALL subjects can offend someone. Please forgive me if you were ….. DONT TRIP HE AINT THRU WIT ME YET

 

 

 

 

 

This is NOT a subject.  This is our daughter, and our lives.

Also, someone asked why I was mad at the whole state of Texas.  Let me clarify – the state’s penal laws allowed that paraprofessional to get away with what she did and that’s what I am mad about.  I do love many a citizen of Texas, one of whom is Maura’s loving godmother.  Who would kick Steve Harvey in the shins for us if she ever met him.

 

 

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